thyroid misery

Amazingfun · 02-04-2014 4:11pm

jozi wrote: »

Just spoke with my doc after she got my bloods back. Have to try and get into her when I get a chance, she wants to talk me through/over this as she said she might put me on a small amount of eltroxin (or a tablet or is this the same?). I think she said my tsh was high but close to borderline for treatment, she said under 10 - from memory.

TSH of 10 is not anywhere near "borderline" for treatment.

I feel best when mine is suppressed (less than 1)

ludobites · 04-04-2014 12:13am

ttoppcat ..Yes in Galway, so it wasn't just me then!
Cltt97 ..Thank you for advice it's only now that Im really getting to understand the road ahead and why I've been the way I've been.

It really was a terrible encounter with endo. Arrogance is a level of stupidity that should never be engaged in by anyone. It speaks to ones lack of humanity and compassion for another human being.

I am going to find a physician out there who will take into consideration my concerns and really look at what needs to be done not just someone going through the motions.

Therefore I would be so grateful if anyone could Please pm me any recommendations or experiences that you have that will help in my efforts to find "the one". Im based in the West but I will go anywhere.

Thank you.

Amazingfun · 04-04-2014 3:18am

I had my very first endo appt. this week and it too was a waste of time. I have talked with loads of others via facebook and you wouldn't believe how eerie it is to discover that almost all of these people read from the same script:

- Said NDT was no good because they don't know how much is in it . (LIE)
- said a suppressed TSH was no good, will affect my heart and bones negatively (LIE)
- thought people taking "pig hormones" was madness. (unreal).

Now, in reality, thousand upon thousands of people are doing far better on NDT than T4 meds, and I am on of them. On top of that, I am down 2 stone since January and I haven't felt this alive in years. Suffice to say, I won't be going back, I am going to continue on my path.

I contacted the Mater private today to enquire about getting bloods done, and hurray---they do free T3 and Free T4. Not sure about Reverse T3 but will get that info tomorrow, along with the price. Will let yaz know.

Amazingfun · 04-04-2014 1:28pm

k so, good news. Mater Private will do free T3 and free T4, along with tsh, etc

Just need a referral letter from your GP and it's 106 euro. Reverse T3 is much more expensive, 280 euro, so I won't bother with that this round, but just good to know we can get it if we want. I am so happy!!

Wyldwood · 04-04-2014 8:25pm

Isn't it a disgrace that we have to fight so hard to get treatment for thyroid problems. It's not considered a longterm illness :rolleyes: so we pay for our meds, we can't get the tests we need without paying for them privately and so many of us are brushed off as hypochondriacs.

I had an appointment with the endo yesterday and it was far from satisfactory. I haven't been feeling the best lately, quite tired & have a low-grade headache a lot of the time. I went in determined to find out what caused me to become intolerant of levothyroxine. His answer was "we don't know you're intolerant" - doh, I can't take sufficient of the meds without getting hyper symptoms. He's still trying to say it could be cardiac rather than thyroid inspite of a 24 hour Holter monitor and stress test and 2 cardiologists telling me my heart was healthy. I presented him with the blood results for the last year since I last saw him and he said I wasn't very hypo, that TSH 10 is the starting point for treatment and I'm (just) under that. CUH no longer do FT3 routinely and he insisted it was an unnecessary test.

I've always found him sympathetic and he does listen but is obviously lost with me. He has agreed to do a scan of my neck to see if there is any tissue left which might be causing problems so that's something at least.

cyning · 04-04-2014 11:33pm

I feel blessed now Kerry still do my FT3 with no issues... Seeing as T4 is a worthless indicator for me! My new babs is 3 weeks old now so back I go into the fun of blood tests and I presume back on to T3 and coming off Eltroxin.

Amazingfun · 05-04-2014 2:51am

Congratulations on the birth of your new baby Cyning!!

Wyldwood · 05-04-2014 4:32pm

Congratulations cyning on the new arrival!

cltt97 · 05-04-2014 5:34pm

cyning wrote: »

My new babs is 3 weeks old now

Excellent news!

cyning · 13-04-2014 7:51pm

The cold is killing me I am so flipping cold and really clumsy

I don't ever remember the cold being this bad before

and my broken iPhone bruised legs and bruised arms are testament to that! Should have blood results back this week and I'll work from there. Anyone any tips on warming up

Moll G · 15-04-2014 2:12pm

I've been put on thybon 20 henning and 75 eltroxin by my endo last Friday. I was on 100 eltroxin and 75 eltroxin alternate days. About 3 weeks ago I felt like I was hyper and had my bloods done. My t4 was 16 but my TSH was over 12. My doc increased my meds to 100 eltroxin but I felt no better really anxious feeling in my stomach and jittery legs and arms. Went to endo in hospital on Friday and gave him blood results and he put me on new meds. I'm feeling pretty horrible at the moment exhausted and my body is trembeling. Has anyone else ever gone down this route and if so how long did it take to feel normal again. I don't think I can last 6 weeks like this. My t3 was never checked so should he have put me on this medication in the first place. When I told him I felt hyper he just disregarded what I was telling him and told me my thyroid reading was normal and made me feel like I was telling him lies. Is there anyone out there who knows a good endo that would listen to patients and why don't our docs check our t3 levels

cocobubbles · 15-04-2014 5:23pm

Hi all,

I'm looking for some advice on what everyone's symptoms were before ye were diagnosed with thyroid problems? I've been absolutely exhausted for as long as I can remember, around 10 years or so. I've had standard blood tests done again and again, all fine UNTIL my most recent blood test came back as "borderline normal".... I have to go back to the doctor this week. However I'm in a catch 22 situation as I have depression and the doctors CONSTANTLY blame the fatigue on this but I know my own body 100% and it has nothing to do with my depression. In fact that's all under control and I'm mentally stable...I have literally tried EVERYTHING in terms of vitamins & supplements but I am literally so exhausted that everyday tasks are a struggle and I'm too tired to go anywhere. A normal evening for me when I come home from work is to have a 2-3 hour nap and then go to bed for the night and sleep another 9-10 hours.

Any help/suggestions are greatly appreciated!!

Wyldwood · 15-04-2014 9:12pm

Moll G & Cocobubbles, welcome to the Thyroid Misery thread.

I can't really offer any concrete advice to either of you but didn't want to read and run.

Moll G I can identify with the anxiety, jittery, shaky feelings and they are horrible. I get them as part of being hypo as well as hyper. Your TSH of 16 would suggest you are hypo. Unfortunately, fewer and fewer labs are testing FT3 now. Apparently cost is an issue. If you give us an idea of whereabouts in the country you are I'm sure somebody will recommend an endo to you.

Cocobubbles, fatigue is one of the symptoms of hypothyroidism but as you've discovered doctors tend to dismiss it. I presume when you say your results came back borderline normal that you are referring to thyroid blood results? Have you any other hypo symptoms? Have a look at Mary Shomon's information on about.com
http://thyroid.about.com/

Amazingfun · 16-04-2014 1:06am

cocobubbles wrote: »

Hi all,

I'm looking for some advice on what everyone's symptoms were before ye were diagnosed with thyroid problems? I've been absolutely exhausted for as long as I can remember, around 10 years or so. I've had standard blood tests done again and again, all fine UNTIL my most recent blood test came back as "borderline normal".... I have to go back to the doctor this week. However I'm in a catch 22 situation as I have depression and the doctors CONSTANTLY blame the fatigue on this but I know my own body 100% and it has nothing to do with my depression. In fact that's all under control and I'm mentally stable...I have literally tried EVERYTHING in terms of vitamins & supplements but I am literally so exhausted that everyday tasks are a struggle and I'm too tired to go anywhere. A normal evening for me when I come home from work is to have a 2-3 hour nap and then go to bed for the night and sleep another 9-10 hours.

Any help/suggestions are greatly appreciated!!

I was only diagnosed after a public incident around October 2012 where I thought I was having a heart attack or a stroke and someone called an ambulance for me. It was terrifying. I had bloods done after that and my TSH was 30. I didn't even know where the thyroid was located at that stage, lol, figured it was near my liver or something, hadn't a clue. I had also gained a massive amount of weight by then and couldn't lose it. I was fatigued as well but had put that down to weight gain. My GP had told me to get bloods done a year previous but I hadn't bothered, figured I just needed to diet more, so that whole year was an added layer of problems by the time I was diagnosed.

Wyldwood · 16-04-2014 8:36pm

Moll G, just wondering if you ever had adrenals tested? Malfunctioning adrenals can cause the symptoms you describe and affect the way thyroid meds work. Might be worth asking for cortisol bloods and also get thyroid antibodies checked if not already done.

Standard advice for all thyroid patients is to get a copy of your blood results and keep a note of how much medication you were on each time for your own future reference. Don't accept "normal" as an answer from doctor, get the numbers and ranges. There is no such thing as normal with thyroid, every person has their own "normal".

JennyR14 · 26-04-2014 6:25pm

I had a subtotal thyroidectomy (half my thyroid removed by surgery) 4 months ago for hot nodule. In the last three months my TSH levels have dropped from 1.49 to 1.01 and while I'm within the normal TSH range I'm having hyperthyroid symptoms again - most notably heart palpitations and feeling wired, and sleep is very difficult at the moment. Has anyone else experienced anything like this after such a surgery/with toxic multinodular goiter? I'm waiting to see the Endocrinologist and I would imagine another surgery is not too far off as I can't possibly sustain these hyperthyroid symptoms for long.

jozi · 02-05-2014 9:33pm

Dies anyone have experience with kelp pils from health food shops? My last bloods came back with higher figures than the should be but not high enough to be threaded for a under active thyroid. Mam, who ised to work in a health food shop, rold be to get kelp and to try it, anyone have any experience with it?

Wyldwood · 03-05-2014 11:50am

Jozi, Can't give you medical advice but I think you have to be careful with iodine/seaweed products if you're hypo particularly if you've Hashimotos. I'd run it by your doc.

lovelystuff · 05-05-2014 11:07pm

Time to try and get a doctor's appointment,I haven't felt this bad in ages ðŸ˜ž I feel so achey all over,my neck is really tender and feeling very depressed. Been doing really well with my diet so I'm frustrated that this keeps happening ðŸ˜¢

cltt97 · 06-05-2014 8:02am

Amazingfun wrote: »

k so, good news. Mater Private will do free T3 and free T4, along with tsh, etc Just need a referral letter from your GP and it's 106 euro. Reverse T3 is much more expensive, 280 euro, so I won't bother with that this round, but just good to know we can get it if we want. I am so happy!!

Hiya,

Do you know how quickly you can get an appointment up there?

Amazingfun · 06-05-2014 6:20pm

No idea, sorry. You'll need to call and ask, but I go the impression it's fairly quick once you have the referral from your GP.

Btw, I got my blood results back from my crappy endo experience, and I am very high on my Free T4, out of range in fact (9-20) 24.5, so I've dropped from 5 grains to 4. I am a bit annoyed though because I felt great, had no "hyper" symptoms at all (sleeping great, feeling fine, not anxious, no weight loss at all this month so no quick weight loss symptoms and everything seems great). But just to be on the safe side I am going down a bit, then I plan to get my bloods done at the Mater in a few weeks time to see how I'm getting on.

Orla K · 07-05-2014 2:22pm

Iodine is tricky, sometimes it's good sometimes bad, it all really depends on selenium. I don't really understand the process but when there's iodine without enough selenium then there's too much hydrogen peroxide (which is produced in the body, iodine is involved in this) Selenium seems to turn it into water.

Also
These videos will only be up for a short time, forgot to post it up earlier

I'm not too sure if that like will work

Bravobabe · 09-05-2014 2:08pm

Hi All,
Searched "underactive thyroid" on boards.ie as I recently was diagnosed with underactive thyroid.
I'm 49, play a lot of sports and went to a Doctor (really my Wife, made me go as she was worried about my swollen ankle and possibility of cellulitis).
The Doctor dismissed the cellulitis query and diagnosed an ankle sprain & prescribed brufen, even though I suggested a diuretic. Not happy I went to a very good physiotherapist, who within 5 seconds diagnosed cellulitis & torn Achilles (my good Wife was correct again).
He got the Doctor in their clinic to confirm the diagnosis and he prescribed antibiotics. He suggested blood tests but I informed him that I have bloods tests done about 2-3 months earlier in the other practice.
I collected the results and when he looked at them he nearly had a seizure, as the test report showed (highlighted in red) underactive thyroid. I don't have the results to hand but they were significant for him to get annoyed/alarmed.
He started me on Eltroxin 25mg & Moduretic 25mg (a diuretic) and I'm to have blood tests after 2 months.
I had suspected I could have this condition as I'm very active person (sports and gym 4 - 5 per week), but have always been overweight and seriously don't have a huge calorie intake" (seriously). But as my Mother was diagnosed with Goitre in the 60/70s and worryingly my daughter was diagnosed at the age of 15 and she is currently on 100 -125 mg Eltroxin per day.

So I have the following queries / suggestions
Is the an active Thyroid group in Ireland?
Patients (including myself) need to demand and stand up for their rights. So if a Doctor or medical professional is inefficient or unprofessional we need to complain about it, to them correctly and to the medical authorities if appropriate.

I'm very concerned about the on-going effects this could have on my daughters health, as she already suffers from all the usual symptoms: tired, cold etc.

Wyldwood · 09-05-2014 6:56pm

welcome to the thread Bravobabe.

As you have already discovered, we thyroid sufferers have to be our own advocates. Sad as it is to say, it's a very poorly understood illness amongst the medical professionals, even at consultant level.

You need to take charge, get copies of all blood results always and note on them what dosage of medication you were on, for future reference. Also note any symptoms you had at the time.

There is no Thyroid Support group in Ireland that I know about but this thread is a great resource and everyone is welcome to come here and rant or ask questions.

I know this is now a very long thread but if you take the time to read through it there is an awful lot of very good information here.

The good news is that most people, once they are properly medicated, are perfectly well so don't be put off by those of us who are struggling.

lovelystuff · 12-05-2014 12:13am

http://thyroid.about.com/od/Empowered-Patients/fl/When-Your-Coworker-Employee-or-Boss-Has-Thyroid-Disease.htm

I just came across this. How amazing would it be to have all these accommodations in work!

ChewChew · 13-05-2014 7:25pm

So,... 9 years under active and they still haven't got me sorted! At the end of my tether! I'd do something about it only im too bloody tired

cyning · 13-05-2014 11:18pm

ChewChew wrote: »

So,... 9 years under active and they still haven't got me sorted! At the end of my tether! I'd do something about it only im too bloody tired

12 years: 3 of being overactive, than RAI, 2 years of being completely controlled and feeling great, and 4 years of varying crappiness: and aside from pregnancy 3 years of not so bad!

I'm starting armour tomorrow: did anyone suffer any side effects? How long until it kicks in?

Emme · 14-05-2014 10:17am

lovelystuff wrote: »

http://thyroid.about.com/od/Empowered-Patients/fl/When-Your-Coworker-Employee-or-Boss-Has-Thyroid-Disease.htm

I just came across this. How amazing would it be to have all these accommodations in work!

I read this and laughed. They expect me to keep going even if I'm dizzy and stumbling around with exhaustion. No allowances are made. My memory is affected and I make more errors than normal, whatever normal is. I haven't been normal for about 10 years. If I make a mistake my boss gives me a hard time. He knows I have Hashimotos (he's a medic himself) but anyone who has worked for medics will know that they are the hardest on you if you are sick or have a chronic illness. I'm on Armour and I can just about keep going. My doc wants me to have reverse T3 and adrenal function tests but I can't find the time to get tested.

Working full time in a pressurized job with Hashimotos is hell. I hope my boss comes back as a galley slave with Hashimotos in the next life!

cltt97 · 14-05-2014 10:56am

cyning wrote: »

:I'm starting armour tomorrow: did anyone suffer any side effects? How long until it kicks in?

I had no side effects on ERFA or Armour and because of the T3 it kicks in reasonably fast.

I'm in my 7th year of Hashimotos, half of which was hell. Been ok for the last 4 but lately getting strange symptoms again. I think I'm going to ban T4 entirely from by body and go T3 all the way...

cyning · 14-05-2014 2:07pm

cltt97 wrote: »

I had no side effects on ERFA or Armour and because of the T3 it kicks in reasonably fast

Fingers crossed I feel like the walking dead right now

thyroid misery

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